Stop Bashing Autism Speaks!

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Don't get me wrong, I'm no fan of Autism Speaks. I think their obsession with a cure is misplaced and diverts resources away from what we really need. But bashing Autism Speaks isn't just a bad idea; it's actually dangerous to our cause. Every time we say something bad about Autism Speaks, we are giving them free publicity. People who have never heard of them before are tempted to research them, and donate to them once they find out more.

What's more, those bashing Autism Speaks rarely put forth another narrative about autism, other than the medical one people already have. Most people see us as resisting the best chance we have to get better. That's why people see us as crazy. We need to develop a definition of autism of our own.

The problem with autism self-advocacy is the black and white thinking that comes part and parcel with an autism diagnosis.

Many so-called self-advocates seem to think they are characters in an autistic version of "Star Wars."

This is not a cut and dry issue. I may be able to advocate for myself, but that does not mean I have the right to speak for the autistic population as a whole.

Autism is a poorly defined diagnosis. To the medical community at large, autism is a collection of deficits which occur in various degrees within certain members of society. For self-advocates, autism is an essential aspect of their personality. But what is autism?

Autism is merely a vague diagnostic label. Is there one kind of autism? Six kinds? 37? We don't know. At least 30 genes have been associated with autism. There are doubtlessly hundreds more.

Some autistics are genuinely miserable. Severe cases may not survive their autism.

If autism is an identity which someone embraces, then let them. For others, autism means severe physical and mental pain, and a complete lack of communication and self-sufficiency.

Do I want them to be cured? Well, I would like them to be out of pain.

Do I want to be cured? I have no idea what that means, and let me let you in on a little secret - no one else does either.

We are working with different definitions of the word autism. For those who see autism as a collection of distressing symptoms, the idea of a cure fills them with hope.

There will never be one single autism cure, though there may, one day, be CURES; cures for bowel problems, for self-injurious behavior, for nutrition intolerance, for seizures... for many of the distressing symptoms associated with some forms of autism.

Make no mistake, while all autistics should be valued, many of the medical issues associated with autism are severely distressing.

If you do not suffer from these more distressing aspects, well, then good for you. Don't stand in the way of treatment for those who do.


If anyone reading this happens to be a plucky, self-advocating Aspie who opposes all genetic research and thinks "cure" is a dirty word, please, watch some of these videos...

http://www.google.com/search?q=YouTube+ ... ent=safari

There is no cure. There may be treatment. People like the guy in these videos desperately need better treatment.

I never knew anything about autism speaks. I listened to the negative comments, researched the organization, and formed my own objective opinions based about the organziation based on facts.

As many advertisements as the organization puts out, I never paid enough attention to them to even remember the name of the organization.

While I don't financially support autism speaks, because of this website, I understand what they do and what they don't do. They focus on research, not direct support for autistic people. Direct support is not part of their mission, so one would expect them to focus in the research area, instead.

For every person that posts here, hundreds view the site, breeze over the topics and have likely not paid a whole lot of attention to all the arguments in the past about autism speaks that have been presented here, instead they likely see the name enough, to get curious, like I did, and check out their website.

The website is nothing like the negative comments, so people have the opportunity to form an opinion about the organization based on the information there as well.

The marketing experts at Autism Speaks understand this simple fact of marketing, and the last thing they would probably want from us is to stop discussing the organization and naming it in topics.

It seems like the autism speaks bashing is getting old enough, where people aren't paying it as much mind as they did in the past. There are only so many things that can be repeated so many times before people eventually lose interest.

The neurodiversity movement has already established a definition of autism based on the social model of disability rather than the biological one.

Not likely that the general public is ever going to understand it well, it is beyond the limited attention span of the public. They'll remember terms like autism, but neurodiversity is going in a direction that is not of much concern to many people other than autistic individuals.

It's confusing enough for people that make a concerted effort to understand it now that most every disorder or mental condition has been attributed to it by various sources.

There is a place in the world for both the medical and social models of disability.

In the latest interview from autism speaks, they state they support the fact that autistic people have positive things to contribute to the world that are valuable, because of their condition, so at least from what they have recently stated, it appears they are aware that some of us are looking at autism completely different than some do that support the autism speaks organization.

Acceptance goes both ways. Objectively speaking, research is important in finding solutions to co-occuring conditions that exist with autism.

And, objectively speaking the neurodiversity movement increases the morale among some autistics, and provides opportunities for individuals to fight for disability rights for autistic people.

Other than that I guess people could discuss the organizations in their area or the regional/national level that are doing good things for autistic people.

I haven't seen any brought up except for ASAN, but they are actually more limited in scope of actual direct support services provided than autism speaks is, simply because they do not have professional support to fundraise, like the organizations that focus in that area of support do.

It's not part of their mission either, so I wouldn't expect them to make any greater effort there than autism speaks does.

There are some good organizations in my area that do provide some direct support within the reach of my community. If I were to actually support an organization with financial donations, it would probably be one in my local area, dedicated to actual support of autistic people.

Everytime we bash them it puts another negative post on the internet. If someone does a google search on autism speaks one of our bad posts could be posted as a search result. This way someone who is not as informed as someone with autism will see what the autistic people they are trying to help think about autism speaks. So I say b***h as much as you can to get the word out about the lies autism speaks spreads about autistic people.

Okay, I'll stop bashing Autism Speaks.

But if the people who run Autism Speaks want my praise, then they should first stop trying to find a way to fix me (I'm not broken), and start finding a way to pay me (I'm greedy).

Fair enough?

It's fair enough that you don't see the sense in bashing the organization.

The organization has stated they aren't trying to treat autistic people that don't need treatment, it's up to you whether you believe that or not.

As far as the money thing goes, with your financial resources, I doubt you would be an individual that merited financial assistance, if that becomes a greater part of their mission. There may be other people that need financial assistance with Autism from charitable organizations, if the government runs dry on resources.

If they can do that for people in the future, they will gain praise from me.

I will not, Awareness, Pride, and the movie Rainman have all made my life harder.

We are three million people, mostly adults, who live, work, and are just trying to get by.

Awareness, Pride, and Rainman were just out to make a buck off of exploiting us.

Research might discover something is a shallow claim. So far it has discovered how to raise and spend a Billion. Awareness has pointed me out to the public.

They play with Raymond to beat the casino, then return him to the Institution.

A bit of black and white thinking, situations get better or worse, this one is getting worse for the three million.

We do not have an institution to return to, we live in a now poisoned world.

Excellent post, I agree with everything in there

There are treatments -- not cures -- for some of the symptoms, e.g. anxiety, depression etc., and the symptoms are spread differently, so is the suffering. Hence i do agree that research should be improved and supported as far as the treatment of symptoms is concerned. Also the therapeutic approaches are far below what they should actually be.

Genetic research, however, would only cause a similar effect as it already has in Down syndrome abortion. People would decide to kill their children before they were born. Yeah, that's a great solution. Early detection, down the drain, problem solved.

lotuspuppy Wrote:

I completely agree, I have seen nothing from them that has particularly impressed me. As long as they run around chasing a cure that dosen't exist, I won't take them seriously. My impression of them is that they are a pointless and misguided organization at present.

But they are quite a wealthy pointless and misguided organization, and it is a better idea to work with them and try and help them understand us. That way their wealth could actually start to benefit Autistic people. Bashing them constantly would just create bad feeling and misunderstandings and just drag us backwards.

I think that the issue of who defines Autism is a really important one. NT's will never understand us and our needs, and in the long run we need to become a stronger community, take over the support role, and define ourselves for ourselves. And misguided organizations like Autism speaks can fall into the abyss, but constantly bashing them at present doesn't help any of us.

im not going to stop bashing autism speaks,asan or aff or any other bogus organization.its time for the tea party of autism politics.

I think they should change their name since they don't speak for the autistic community at large, which is what the name seems to indicate that they are trying to do. They don't even really try to do that, though, so it sounds like a misnomer to me and gives people the wrong impression.

From some of their advertisements I have heard on the radio, I think that they run a fear campaign. The message seems to be something like "Oh it was so terrible for me when I found out my son had autism, yours might too!! " which sounds a lot like what politicians do when they try to get votes: convince you that there is a problem that you should be afraid of and that they have the solution.

The above is not based on anything read here, just on my own observations. I don't "bash" them but I kind of roll my eyes when I hear one of their radio ads.

I never said that. I asked if it was fair enough. There is plenty to bash Autism Speaks for, but I have better things to do.


I'm not asking for assistance, I'm offering to praise them in exchange for money.


So what? Let them drink Coke.


That's a mighty big "IF".

You asked a question was it fair enough; obviously from your remarks you don't care for the organization, but as far as I could see from your remark you didn't presonally see the sense in bashing the organization, your reason clarified you have better things to do; that makes perfect sense to me, it's probably the reason at least 99 percent of autistic people don't take the time to bash the organization, in the public arena.

It's not likely that more than 10 percent of diagnosed individuals even participate in online discussions at autism support sites on a regular basis. At any given approximately 20 are posting here, 5 or 6 at AFF. Others scattered here and there, but that's out of Millions of diagnosed autistic people. Ten percent would be an extremely generous estimate. And that's just the individuals with a diagnosis.

Offering to praise Autism Speaks in exchange for money, would be an illegal proposition for the organization; it's not a reasonable request.

Easier said to drink coke when a person permanently disabled with autism or any other condition no longer has resources, than done. Some people are concerned about that.

I agree it's not likely Autism Speaks is ever going to provide direct financial assistance to people, as far as a paycheck goes, however they potentially could provide support for more direct services. If they can manage to do this and research, they would gain praise from me, also.

Progress IS being made, slowly but surely.

If you click on the link in my signature, you will find links to articles I have written for Autism Speaks website (yes, I was hired to do some of them. If that makes me a traitor, then everyone should stop demanding AS hire autistic people and allow them to speak for them). These articles present a realistic portrait of my own life with autism.

Autism Speaks have shared my articles on their FB page. Parents responded very enthusiastically to the articles, because seeing the writing of an adult autistic gives them hope for their children.

Autism Speaks has granted me a sizable platform on which to spread a positive message about autism. They brought me to San Francisco to cover Hacking Autism, a program focused on providing technological services to autistic people.

They ARE changing. People like Peter Bell have fought to make positive changes in their organization. Now I am doing the same.

Those that stand outside their house waving the bird accomplish far less than those who join them for dinner and an adult conversation.

Autism Speaks is not a single, evil entity, it is a large organization filled with people of differing opinions, some of whom are working tirelessly to provide for autistic people.

Yes, they have made some serious mistakes. They are learning. It is up to us to help them learn.

Last edited by Tambourine-Man on 21 Oct 2011, 1:16 pm, edited 1 time in total.

I wont be told not to bash something. But I will say that I wont bash for no reason. As for what Autism Speaks does we already have a long list of what they claim to do. We shall now hold them to it.